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Hello Trisha, have they suggested a pacemaker or defibrillator at all?
At this point they have not suggested either of those. Is that something they could do to help fix the problem. To be honest I am having a tough time understanding this new issue that they have introduced to us. Any thoughts would be helpful! Thanks so much!
Susana Arroyo said:
Hello Trisha, have they suggested a pacemaker or defibrillator at all?
I am a manifesting carrier of Duchenne.
meaning that even though I am female, I still experience symptoms and signs of Duchenne MD.
I had a 2 in 1 device Pacemaker with Defibrillator placed in February 2012.
The device was used in my case because I was experiencing arrhythmias that could potentially be life-threatening.
It is there to shock me out of a dangerous rhythm if necessary.
I have never been shocked by it.
I had a Left Ventricular Assist Device placed in February of this year.
It helps the left side of the heart do its job.
I am the second person with a Duchenne Diagnosis to get such a device.
It doesn't seem you son is at that point though.
My Ejection Fraction was extremely low because of so many years living with Duchenne.
I just want you to know that there are options if his heart were to decline in the years to come.
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